Correspondence with the Mayo Clinic re ME/CFS! (amazing response) - UPDATE

Sancar

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Mary! Bravo!!! Thank you for taking the time and effort to draft such a well stated letter on the behalf of us ALL!

A personal letter such as yours garnered more attention no doubt than even the IOM's 2015 Report, which was sent out to medical institutions such as Mayo Clinc. Medical institutions such as. Mayo get hundreds of "Medical reports" and updates every day to hundreds of diseases that are "readily recognized" by the established medical community.
~~ Your 'personal' letter in such a direct and afront manner had to be acknowledged, not just shifted to the bottom of the pile. The fact that the one reply stated that you letter was "fortuitous" leads me to believe you have added to other information that was to be "updated/corrected". Your letter may have been the 'straw' that will make that happen sooner than later.

I applaud you for the successes you have received:trophy::star::trophy::star::star::star:
 

Mary

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The fact that the one reply stated that you letter was "fortuitous" leads me to believe you have added to other information that was to be "updated/corrected". Your letter may have been the 'straw' that will make that happen sooner than later.
Thank you @Sancar - I certainly hope so! Time will tell ..

And thanks to everyone else for your very kind remarks and support. The letter took a few months, possibly even 3, to finish. I credit finishing it to my Catholic upbringing (though I "lapsed" a long time ago) - you see, in February of this year I stated on the board that I was going to write to the Mayo Clinic after someone had a horrible experience with them. And once I stated this, I could not back out of it. I have a very rigorous conscience which would not have granted me peace if I didn't do what I had said I would. So thanks are in order I guess to all the nuns! :D
 

Nickster

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Thank you @Sancar - I certainly hope so! Time will tell ..

And thanks to everyone else for your very kind remarks and support. The letter took a few months, possibly even 3, to finish. I credit finishing it to my Catholic upbringing (though I "lapsed" a long time ago) - you see, in February of this year I stated on the board that I was going to write to the Mayo Clinic after someone had a horrible experience with them. And once I stated this, I could not back out of it. I have a very rigorous conscience which would not have granted me peace if I didn't do what I had said I would. So thanks are in order I guess to all the nuns! :D
Mary I had the catholic upbringing too and completely get it! A bit determined and stubborn -lol.
Ann
 

Mary

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Mary I had the catholic upbringing too and completely get it! A bit determined and stubborn -lol.
Ann
There were some times I just wanted to stop - it was so much work, I had to wait until I had energy and then use it on this instead of something else, etc., doing a bit at a time. And revising and revising ... In all seriousness I don't know if I would have finished it without my very vocal conscience! :nervous: (it's sort of like my cat who won't shut up until she gets what she wants :lol: :cat:)
 

Mel9

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Well done, @Mary. This is a nice alternative to the Crawley paper which could be worth flagging to any Mayo paediatricians you correspond with (if you haven't already!) - a paediatric primer published 19th June 2017:

http://journal.frontiersin.org/article/10.3389/fped.2017.00121/full
Its authors are mostly American, e.g. Peter Rowe, but it also includes experts from the UK (Nigel Speight), New Zealand and Australia.

It's all kinds of fabulous.

It's well-referenced (199 references to Crawley's review's 52). It covers comorbid conditions such as orthostatic intolerance, joint hypermobility, gynaecological issues, gastrointestinal issues, allergies, neuroanatomic abnormalities, oral and dental issues. By contrast, Crawley's review briefly discusses three comorbid conditions: mood disorders, eating difficulties and obesity. It's very practical, and includes many resources like a fact sheet for schools, sample physician's letter, list of differential diagnoses, and an additional OI resource. It just oozes understanding of the condition.

(The Crawley review I'm referring to is Brigden et al's 2017 paper in Arch Dis Child entitled "Practical management of chronic fatigue syndrome or myalgic encephalomyelitis in childhood". I'm not sure if this is the same one the Mayo paediatrician sent to you.)

Let's share Rowe et al's 2017 paediatric primer/review as much as possible!


what a great primer!
 

btdt

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Thanks, @btdt , for providing the link to the article by Doctor Mark Donohoe. In addition to the respect and trust expressed towards patients regarding their lived experience with multiple chemical sensitivity (and also what he referred to as chronic fatigue syndrome), some of the content shows an understanding of these conditions that is quite remarkable, especially considering the article was written approximately 20 years ago. Here are a few excerpts:

"These tests, in total, suggested two things to me. Well, three things really. Firstly, we were not dealing with an homogenous, single disease entity. More likely, these people represented a group of disorders with common symptomatology, much as we had found in the closely related chronic fatigue syndrome.

Secondly, if one were not careful to divide this group up into appropriate sub-groups with common defining characteristics, the statistical assessment of the group would . . . fail to find real differences between these people and the “normal” population.

Thirdly, and for me most importantly, it suggested that we were finding stable states of health (or ill health) which were not subject to homoeostasis, or a return to “normal” function, any longer. I say this because the peculiarly individual “abnormalities” remained surprisingly constant over months or years, and had all the hallmarks of a stable adapted response. Whatever the original injury and damage, the expected recovery did not happen. . . . The temperature lowered into a state of mild hibernation, minimising physical demands of a system under stress. The person was not well, but was not as ill as they may otherwise have been. More importantly, they were not about to “recover” if recovery increased damage and shortened life."

"I learned that day that explanations based on indefinable (and essentially unprovable) psychological explanations are frequently our first answer, but are rarely our best."

"Specialists spend much of their time either squeezing hexagonal pegs into round holes, or finding no problems where clearly problems exist. Both these approaches cause immense problems for those with novel, challenging or emerging illnesses. In the “hexagonal peg” scenario, the problem is reduced to one which fits with the specialist’s training or interest. Failing to see the bloody obvious is less dangerous, unless the specialist is to give a report to a lawyer or insurer! Each approach can lead to gross errors, occasionally flirting with scientific fraud."

"Where causes are not easily found, we invent causes. . . . They need to make the majority of us comfortable that the causes do not apply to us. We need . . . a type of rubbish bin for medicine, where we dump the conditions and people who we either do not understand, or who make us uncomfortable. Psychology and psychiatry will do for now. These are pernicious bastard children of medicine. Ever ready with an explanation which fits the needs of the medical model, there is no escape for the people trapped in their prejudices."

I could continue quoting this excellent article, with content suitable for various threads. For example, the intervention of government and police in cases of parents trying to protect a child from the harm of chemical exposure -- similar to the recent BBC radio segment on parents of children with ME. I haven't finished yet, but consider the article well worth reading.
I absolutely loved this article as it was the first bit of sense I have found on this subject in a long time some of what he said... especially the sleep is what I know to be true I have video of myself sleeping it is so odd ... no testing while sleeping like he does but way back then he did things and noticed things others have failed to. I wonder how he treats patients now... if it were within my means I would be where he is finding out right this minute. I think he started on a path that likely got him in trouble...and he posted that book as an act of being naughty... can't find the real word...sorry words fail me. I still want to know what else he has learned in the past 20 years that could help us.

I know he has an email and I did intend to email him never did I am fail at follow up... always do... I forget but this not to the mayo clinic got me thinking this person wants tobe and has energy and clarity to be an activist I will give it toher...yes I know... she may not want to... in the old daysI would have done thisby now but this is now... I don't have what it takes.
 

btdt

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There were some times I just wanted to stop - it was so much work, I had to wait until I had energy and then use it on this instead of something else, etc., doing a bit at a time. And revising and revising ... In all seriousness I don't know if I would have finished it without my very vocal conscience! :nervous: (it's sort of like my cat who won't shut up until she gets what she wants :lol: :cat:)
Mary you did a wonderful job and I just made a post saying maybeyou would take on more.. disregardthat please... you have done plenty...and I am sorry for being so insensitive...

thank you
 

Little Bluestem

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However, I don’t recognize your name (despite having grown up in southern California) and don’t know if we’ve met.
Very professional composed and to the point.
@Mary, I just caught up with this thread. I am as awestruck as everyone else! :heart::star:
I wonder if that doctor who didn't know if you had met 'mistook' you for a medical professional. We all know that you are a pro in the ways that matter.
 

Mary

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@Mary, I just caught up with this thread. I am as awestruck as everyone else! :heart::star:
I wonder if that doctor who didn't know if you had met 'mistook' you for a medical professional. We all know that you are a pro in the ways that matter.
Thanks @Little Bluestem! Two of my sisters pointed out the same thing - it had never even occurred to me that he might have thought I was a medical professional. I thought he was trying to figure out why I had sent the letter to him in particular and that all he could come up with was that he had been in southern California at one time and perhaps our paths had crossed somehow. I was going to tell him that there are millions of people in southern California (as though he were not aware!) so the likelihood of us meeting was pretty remote, especially since I am home 90% of the time, but I thought that might be a little condescending, so I didn't. :lol:
 

btdt

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Maybe people with our illness don't ever write letters so doctors are befuddled when a person does...

Now if there is a huge letter writing campaign going on that I have not helped with and not heard of I just put my foot in my mouth... if so forgive me.

and maybe there should be... a campaign I mean.
 

Mary

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Maybe people with our illness don't ever write letters so doctors are befuddled when a person does...

Now if there is a huge letter writing campaign going on that I have not helped with and not heard of I just put my foot in my mouth... if so forgive me.

and maybe there should be... a campaign I mean.
I've never heard of an organized letter writing campaign to doctors per se, but I'm sure many people take individual actions on their own writing to various entities.
 

Learner1

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Just found this thread... Thank you, Mary, for your articulate letter. It is inspirational!

I'd called and emailed the CDC several months ago after a doctor had handed me the dreadfully out of date UptoDate publication with a phone number of an office that didn't seem to exist army the CDC.

Finally got a call back from a knowledgeable subcontractor who assured me they were working on an update and explained that the UptoDate representative had missed some key meeting last fall, but they were working on getting that updated, too.

Advocating does work. I know now it was the work of many, but the CDC website has now been updated, another piece of information we can share in our battle to get better info out there.

Its important as we face battles with insurance, disability, employers, family members, and even medical providers. We can take actions like this and slowly make change to make our lives easier. :)
 

Learner1

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@Learner1 - well done! :thumbsup: I know it was the work of many, but still it seems every bit helps. I'm very impressed that someone from the CDC actually got back to you. I had always assumed that monolithic institutions such as the CDC and Mayo were impervious to lowly patients!
Persistence pays off... I think it took about 6 calls and emails and then a wait... I was surprised when she called and we had a very nice conversation.

I think we need to realize that there are real people behind the moniloliths... Working through the bureaucracy to find people who can listen and make changes is important...

Did you hear anything more from Mayo?